[NB The UK version of this book is called “Waiting For Superman: One Family’s Struggle to Survive – and Cure – Chronic Fatigue Syndrome”]
By David Tuller, DrPH
Tracie White, a science writer at Stanford University, first stumbled across the story of Whitney Dafoe as an assignment from one of her editors. That initial encounter ultimately turned into The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness that Stole His Son, an account that Kirkus called “a complex, well-related story of medical detective work.”
The story of Stanford geneticist Ron Davis and his son Whitney’s severe case of ME/CFS was certainly not unknown, given previous coverage–starting with Miriam Tucker’s excellent 2015 feature in The Washington Post. White’s is the first full-length account. During the reporting of the book, she grew close to the family, which included psychologist Janet Dafoe, Whitney’s mom, and his sister Ashley. I asked White a few questions about the process of writing the book.
1) How did the magazine story come about? And how did the idea of a book come out of that?
Originally, I was assigned the story by my editor at Stanford Medicine magazine who asked me to write about Ron Davis, PhD, a legendary scientist at the medical school. Ron had changed the course of his decades of genetics research to find a cure for his son Whitney’s illness, ME/CFS.
A literary agent read the magazine article, which was published in the Spring of 2016. He was drawn to the story and contacted me about turning it into a book. I hesitated at first. I knew the emotional toll it would take. But I talked to Ron and his wife, Janet Dafoe, and they were excited about the idea. The entire family was willing to forgo their own privacy to do this. They had already dedicated themselves to this mission of finding a cure, not only for Whitney, but millions of others with this horrific disease, and to tell their story to the world. How could I refuse to help?
The next step was trying to sell publishers on the idea. We got a lot of rejections for a book deal, primarily because marketing departments said the story was too sad. It wouldn’t sell. But Krishan Trotman, my editor at Hachette Publishing, was willing to take a chance on it. She saw something more in this story than just tragedy. She saw the hope, too. And a chance to help right a terrible wrong.
2) Did your idea of the book or what you wanted to communicate with the book change as you worked on it? If so, how?
Yes, it did. But I expected that. One of the problems with writing nonfiction is that, in general, you need to sell your story ideas to editors or publishers before you’ve done all your research. And yet, I don’t see how you know what the real story is until you’ve done all the research. It’s a kind of Catch-22. You sell the idea, and then the idea changes as you follow the research trail. Doing the in-depth research myself is key to writing with confidence, to getting it right. As I began to do more research, the book changed.
The book took a major turn when, deep into writing it, I suddenly became able to interview Whitney himself. I didn’t think I’d ever be able to meet him, let alone interview him. Telling Whitney’s personal story from his point of view — doing my best to speak for this young man who was speechless — became a major focus of the book. It changed the story and made it so much better. It also involved a lot of rewriting and begging my editor to push back my deadlines.
3) What were the challenges in writing a book about someone with limited ability to communicate? How were you able to interview Whitney?
When I first visited Ron Davis at his home in Palo Alto to write the magazine story, Whitney was at one of his lowest points. He was basically starving to death and had just been put on a feeding tube. He was too sick for anyone to come into his room, other than his parents or other caregivers, and even that often made him crash.
That changed two years later, when the family discovered that, for a short period of time, after an infusion of the drug Ativan, Whitney was able to emerge from his semi-comatose-like state and communicate a bit with his hands and facial gestures. About once every two or three months, usually during a visit to the hospital when he needed a feeding tube changed, he wanted me to come interview him. I could speak to him, but he could only communicate to me using something his mom calls “Whitney Sign Language,” or WSL.
Interpreting WSL was a major challenge for me, even when his mom and his sister Ashley helped. Whitney would spend months alone in his room in-between interviews, planning what he wanted to say, and then he would grow agitated and frustrated when we didn’t understand him. He was desperate to tell his own story. He wanted people to know that he was so much more than this very sick invalid, trapped in bed, unable to eat or speak. That he used to be healthy and active, a world traveler and photographer, who liked to tell jokes and loved music. He wanted the world to know that he was still that person, despite the years that this disease had stolen from him. That he needed a cure to be freed of it.
4) You cover the science and medicine but your focus and attention seem more on the family and relationships and your own immersion in their world. How did you balance all those elements?
During my many years as a journalist and a science writer, I’ve studied the craft of narrative nonfiction writing — which is the way I chose to write The Puzzle Solver. I believe in the power of storytelling to change lives, and narrative nonfiction is basically just good storytelling. It involves telling human stories based on fact — interweaving the news, the science, the history, all together.
As a science writer this can be an extra challenge, because it takes so much work to find the story behind the science. First you have to understand the science, and that’s not easy–at least not for me. And then you have to figure out the story behind the science, the human story of the scientists and their work, of patients and their suffering. And then the story emerged, in this case, of the promise of science to help alleviate that very human suffering.
5. What did you learn from writing this book?
One of the reasons I love writing nonfiction is because I learn so much personally from listening to other peoples’ stories. This tale, in particular, has taught me so much. I learned not only about the travesty of how patients with ME/CFS have been treated unfairly for decades, but how patients with chronic illnesses survive despite this. It’s a level of bravery and persistence that I so admire. I learned so much from Whitney–in particular, how he managed to find joy in the darkest of places. How he sacrificed, often his health, to help others.
One day, long after Ron and I had signed a contract to write a book titled The Invisible Patient and the publishers had designed a cover with that title already printed on it, I had the chance to meet with Whitney in his bedroom for the first time. He was insistent on that day that we change the name of the book. I tried to explain it was too late.
But he grew angry, and somehow managed to pulled aside his blankets, lift up one of his legs using his hands and stamp it on the floor. If we didn’t change the title, there would be no book. So we changed it. The publishers were not happy but they did it. Whitney’s passion informs this book. His message: he’s not invisible. People with ME/CFS are not invisible. It’s time for them to be seen.